If you’ve read this blog for more than, like 5 minutes, you’ll know that I absolutely love memes. They’re a hilarious way to capture those random moments in life and time. I’m a big believer in laughter and while the life of a Heart Parent isn’t an easy one, I think it’s good for us to find the humor when we can. I’m not at all making light of our situation, but I do find that whenever I see something online that resonates deeply with me as a Heart Dad, that I tend to find it even more uplifting. So Heart Parents, I see you…you’re doing a great job. This is for you: the life of a Heart Parent…as Told by memes…

Hospital Life

The STRUGGLE of trying to get remotely comfy on those skin-eating vinyl monstrosities! And, of course, when your kid finally falls asleep, you decide you can finally shift just an inch and then the chair/couch in the room releases one of those vinyl fart noises that could wake up a bear.

I’ve actually gotten pretty good at silencing those machines. But it never fails that once you and your heart kid settle down, the machine is like, “Let me play you the song of my people!”

Maybe I’m not too sharp, but there were lots of times I’ve listened in on physician rounds and thought, “Was that even English?”

BRUH. Don’t even get me started.

When You Finally Get Home

When you finally bring your Heart Baby home from the hospital and everyone and all their homies wanna come to your house, but you’re not having it, because infections are real and scary.

When the Pharmacy (once again) Doesn’t Have the Meds Right

How many times do I have to repeat myself?!

When the Bills Start Arriving

It is insaaaaaane how much healthcare costs!

Appointments…Appointments Everywhere

To be honest, they’re all pretty nerve-wracking.

And Then the Cardiology Appointment Goes Well!

“See you in 6 months” never sounded so beautiful.

And You Just Keep Going

Sleep?! What is that?

Flu Season is Hermit Season

Sometimes it Feels Like People Just Don’t Get It

In the End, This is What It’s All About

We love our kiddos! They’ve been through so much and they do it with such bravery: whenever they accomplish anything, it’s a huge moment to celebrate and tackle them with all the hugs!

Isn’t it amazing how music can capture a feeling or a point in time during your life? It can motivate, soothe, energize, create memories, create joy. I think it’s one of the most powerful things we have in our world – because it speaks to us in different ways and we tend to be very unique in what we like and how it moves us. I’m a huge music fan: I love to listen to it, obviously, but I also love going to concerts and discovering new things out there in the music world. My car is practically overrun with all my music CDs – and yes, I prefer my music experience to be a tactile one, don’t @ me. It’s important to me. “What does this have to do with CHDs?” you might be thinking. Well I want to talk to you specifically about a song that has resonated a lot with me lately.

Let me introduce you to John Mark McMillan:

This dude is an incredible musician and songwriter. You most likely know him as the guy who wrote “How He Loves,” but he has a ton of other fantastic songs. The funny thing is my discovery of his music really coincided with the beginning of my journey as a Heart Dad. I can speak to several times during Nolan’s recoveries – or just life in general – where his songs like “Holy Ghost” or “Mercury & Lightning” seem to perfectly capture my current feels/hopes/struggles. Seriously, he’s a fantastic songwriter and you need to check him out. But this isn’t just a mere shoutout as a fan, I want to focus on a song off his album Borderland, which is called “Love At The End.”

Now I’m not gonna speak for Mr. McMillan about what this song is actually about (feel free to hit me up if I’m totally off-base, man!), but I can speak to what it means to me. Specifically I want to talk about the lyrics that say, “I’m on the brink / But I found love at the end of the world.”

This album is full of amazing songs and I love this one, too, but lately that part of the song has really stuck out to me. As of this post, it’s Congenital Heart Defect Awareness Week, where I – and others like me – do our best to make the world aware of CHDs and their impact on the lives of children, adults, and parents. One of the things that comes along with CHD Week – at least for me – is a lot of trips down memory lane, which can be hard. You tend to be reminded how it felt when you found out your son would be born with half a heart, or how he looked post-surgery with his chest open, hooked up to all those tubes and wires. You remember all those struggles and how scared it all made you feel.

It feels almost like the end of the world. You face a thing that shouldn’t be: kids shouldn’t get sick, they should have surgeries, they shouldn’t be in pain. But here you are. You’re thrust into the medical word with all its bells and beeps and jargon and acronyms, you’re doing your best to make ends meet, to afford the meds, to make one more call to the insurance company. All this while life continues to move along without you – you might lose friends, might lose family, might lose opportunities. The end of the world, as you previously knew it.

John Mark McMillan’s song serves as a reminder that while we’ve seemingly hit the end of the world, and we’re scratching and clawing our way into some sense or normalcy, a tremendous amount of love lives there: your Heart Kid. I love all my kids, I’m their dad and proud of it, and I love them all equally. The amazing thing about Nolan being born, though, was that his experience seemed to unlocked some kind of other level of love that I didn’t know what there. Have you felt the same way? I hope you have! I feel like throughout this crazy, difficult journey, I feel like I’ve learned to love bigger, if that makes any sense.

That makes every hug even more epic, every accomplishment one to really celebrate, and every moment a valuable one. In spite of all the horrific things I’ve seen my son go through, I still managed to find love there, at the end of the world.

I know that this life is a hard one for us and our kids and that you’re out there doing your best – and shout out to you for that – but when it really feels like you’re about to lose it, maybe remember how you found love at the end of the world. It’ll show you that you are indeed strong, capable, and you’re not done yet. Stay strong, Heart Fam, and enjoy John Mark McMillan’s “Love At The End”:

Hello readers! February 7-14 is Congenital Heart Defect Awareness Week. This is the time (though it’s pretty much year-round for me) where we get everyone’s attention by sharing facts about CHDs, which have no cure. The Pediatric Congenital Heart Association has done a fantastic job creating a graphic that sums up the impact of CHDs:

CHDs are devastating for families. Painful and frightening for kids. Expensive to treat. Grossly underfunded in terms of research.

Please share these facts with the people you know and with the people you don’t know, because everyone needs to know…the more support we get for CHD research, the better chance we have of eliminating it one day.

So this week, give your Heart Kid an extra tight hug and be grateful for them and all that their experiences have taught you. For those who mourn this week because CHDs have taken your loved ones, my heart goes out to you and breaks for you. If there’s one more thing I ask, is that this week you do something kind for someone else, in the name of the kids fighting Heart Defects and those who have passed on.

I wake up pretty early for work – just after 5am, usually – and let’s face it, it stinks. No one likes getting up while it’s still dark out and leaving for work while it’s still dark out. For me, however, I got a little bit of perspective over the last few months while leaving for work and – if you’ve read this blog at all – you know that perspective in this journey is an important, and helpful, thing. You see, I used to just wake up, shower, get dressed, let the dog out, give Nolan his morning meds, pack my lunch, make coffee, and then head out to the car and off to work. Boom. Same thing every morning.

The last few months, though, I’ve come to give a little bit of appreciation to leaving for work while it’s still dark due to one thing: the view. While leaving for work one day I just happened to look up and – WOW – it was like the sky was darker than usual and the stars were brighter. And it was incredibly beautiful. So then it became a morning thing: go out the front door, lock it, then look up. The moon would shine, you can pick out a constellation or two, maybe a planet like Venus nice and bright in the morning sky. And call me a nerd if you want, but it’s almost breathtaking.

You see, where I grew up there was a lot of light everywhere, so seeing the stars wasn’t really much of a thing. You can see some, but it also wasn’t the kinda neighborhood where you hung around outside looking up at the sky. Over time, you take that kind of thing for granted. Yeah, there’s stars and a moon, they’re up there all the time, big deal. I live in the ‘burbs now and while there’s still quite a bit of light, I can see the stars much better now than when I was younger, and now I find myself in awe. How they can be so far away and still seem right there, how we”ll see more of the moon’s surface in our life than our own planet’s (when you think about it). I think about how people navigated using the stars long, long ago, and how amazing it is that – as far as we know – we’re the only living beings out there. Crazy, right?

For Christmas, the kids got a telescope as a family gift and I think I was the most excited to use it. I’ve looked at the moon with it several times (most recently the blood moon eclipse, which was amazing), but the first time we set it up and I finally got the moon in view, it was really breathtaking. Even the kids were amazed, and they don’t seem amazed by anything sometimes. The stars, the moon, space…it just leaves me with this amazing sense of wonder. What else is out there? What will we find out in my lifetime? What’s it like to be in space?

There’s something about that sense of wonder that I find – I dunno – grounding, in a way. When I look up in the morning sky and see those stars as I’m walking to my car, there’s that feeling of being so small in this great huge universe. And that’s actually ok with me, it doesn’t bother or intimidate me at all. It tells me there’s so much more to know and to learn. And that I’m lucky to be alive, on Earth, to see what discoveries happen next. That’s amazing!

Then I get to thinking about being a Heart Dad and I realize that this life is often full of wonder, too, if you stop and think about it. The other day I was giving Nolan his evening meds: he’s sound asleep by this point and I was just kind of watching him sleep and breathe slowly (you parents know all about the “you still alive?” nighttime check). And then it hit me, even though I already knew it – this kid has half a heart. HALF. That’s wild…and it, like, still pretty much functions. Yes, the plumbing is different right now and it’s nowhere near perfect, but whoa. That’s pretty amazing. What does it feel like to have half a heart? I don’t know. I don’t think Nolan can describe it to me at this point, and either way he doesn’t really have much of a reference point for what a “normal” heart feels like. When Nolan gets to running around and playing, or when he’s at the trampoline park jumping around and climbing, you can sometimes forget about his HLHS. And yeah, that gives me a sense of wonder, too. Yes, CHD is stressful and scary, but wow is it amazing what this kid can do and how his body works.

Look at our own bodies! Before our heart warriors, I’m certain we really didn’t think much about our own physiology. We didn’t think about heartbeats or circulation or the intricacies of the human body. At least, I didn’t. But man, now that we’re kinda immersed in it, it’s pretty amazing right? It’s amazing how far medicine and healthcare has come. And it’s amazing to see where it will go.

I just think sometimes we get too caught up in everything…life hits you hard and fast…and we don’t take time to dwell in wonder about something. It’s a lot like me growing up, not seeing much of the stars and not bothering to really acknowledge that they were there. But now I can take the time and I have the ability to see them and be amazed. Often we let fears and anxieties of the CHD life consume us. I’m not saying it’s wrong to be afraid, or that it’s wrong to be anxious. I understand and accept that those things will always be there and they hit me, too. But I wonder what it would be like if every once in awhile we stop, open our eyes and our minds, and just dwell in the wonder that is our heart warrior….or the wonder of the human body, or the ocean, or space, or animals, or nature, or whatever. I’m willing to bet that in those moments when it feels like life is spinning just a bit (or a lot) out of control, letting wonder keep you grounded with help you a great deal. I know it does for me. So maybe get out there early in the morning or at night, take a few deep breaths, and look up. The stars are out there waiting.

This past December, Grant and Nolan turned the big number six. I can’t believe they’re already six, I can’t believe how much they’ve grown, and I can’t believe how much they’ve accomplished this year:

These two kiddos went from NICU babies to big boys starting Kindergarten. Nolan has been making some really wonderful progress with his eating, in fact, we really only use the g-tube right now for medications while he’s asleep. That’s amazing! Grant has started karate and is really enjoying that. I really love these two kiddos: they can go from sweet to crazy in the blink of an eye, but at the end of the day they bring us lots of joy and laughter.

We celebrated their birthday at home with some presents and fun. Each kiddo got a little cake that was decorated with their favorite animal. Nolan had owls and Grant had sloths (I told you, they’re a trip).

Every birthday is a big source of celebration in our home, especially for Nolan…every year is a gift! Love you boys!

Happy New Year, everyone! I hope 2019 brings you an amazing year! I have a few 2018 posts to catch up on, sorry for being so late on these…away we go!

I’ve been living in the Charlotte, NC area for almost 14 years now (wow, time flies!) and as far back as I can remember, one of the morning radio shows that has always been popular has been the Ace & TJ Show.

These guys have been in the business for quite some time and they’re hilarious. On top of being really funny and entertaining, they have a really great heart as well. Every year they do something called Breaking & Entering Christmas, where people can nominate families who are having a really tough time during the holidays, and they’ll go into their home while no one is there, furnish the place, leave gifts, decorate for the holiday, etc., and then leave without a trace, providing an amazing Christmas for a family in need. It’s SO cool. They also run a non-profit called Ace & TJ’s Grin Kids, which provides a magical, all-expenses paid trip to Disney World for medically fragile kids between the ages of 5-12…and they’ve been doing it for 19 years!

This was the first year Nolan was old enough to qualify, so early in the year I filled out the application and got his cardiologist for fill out his portion. Then in the summer I got the phone call: NOLAN WAS SELECTED AS ONE OF THE GRIN KIDS FOR 2018!!!

I was SO excited! The kids have never been to Disney, and I probably hadn’t been to Disney since I was near the kids’ age. The twins have never been on a plane either, so this was going to be a wild experience for them!

The trip wasn’t til October, so I held off from telling them because if I told them in June, they’d be asking every day, “Is Disney tomorrow?” and I just can’t handle that craziness. But 10 weeks out from the trip, I pulled up a video on YouTube about Disney World, Animal Kingdom, and Hollywood Studios. The kids all enjoyed watching it and thought it was cool…then I dropped the news, telling them we’d all be going there together on a special trip! And what a special trip it was:

The Kickoff

When the day finally arrived for our big trip, EVERYONE was really excited. Grin Kids would be covering everything for us, which we’ve never had happen before, so we literally just had to pack and show up. Nolan was ready to go, and especially excited to meet his favorite character, Donald Duck:

Instead of flying out of the major airport in Charlotte, we flew out of a smaller regional airport nearby: the flight was chartered, so it would be just for the Grin Kids and their families. Plus, we didn’t have to go through all the typical, stressful TSA security checks – just an ID check, some wanding, and then we could walk right on the plane! But before we even did that, the Grin Kids threw everyone a BIG send-off party! It was amazing: we drove up and volunteers loaded up our bags and helped the kids out of the car while I parked; there were mascots there from all our local sports teams, including Nolan’s favorite, Sir Purr:

We got to meet the other Grin Kids and their families, there were lots of companies and vendors giving out snacks that we could pack with us for our trip (SO helpful!) and other groups like dancers, ice cream trucks, cheerleaders, race cars, and more! The kids all had a really good time and was the perfect way to have fun while waiting for our plane. Once we were ready to board, all the cheerleaders and mascots and guests lined up and each Grin Kid was introduced and got to walk/run the red carpet to lots of cheers and music. It was AWESOME – you should’ve seen Nolan’s face, he was all smiles and giggles. Then we breezed through security and walked onto the plane.

The flight was quick and the kids enjoyed their flight. When we landed, the special fun continued: the local sheriff’s department had motorcycle officers meet our plane and give us a special police escort while we rode our buses to the All Star Sports hotel. The boys REALLY loved that, plus that meant zero traffic for antsy kids!

We arrived at the Disney All Star Sports hotel, where our bags were brought to our rooms for us, and we enjoyed a pizza party and some arcade time before settling in for the night, because the next day we had to get up super early to head to the Magic Kingdom!

Magic Kingd

We got into the park early – before anyone else – so we can take a group picture in front of the castle:

Nolan was really excited about all the things he was going to see: was he going to meet characters? Was he going to do some fun rides? He was VERY much looking forward to riding the Dumbo Ride:

After our group photo we went immediately to a special breakfast just for the Grin Kids….what they didn’t know was there were some special visitors coming: Mickey, Minnie, and Goofy!

Look how happy that kid is! He got to dance with Minnie, laugh with Goofy, and give Mickey lots of hugs. At one point while meeting him, Mickey told him that he loves him. Luckily someone on the team caught it on video…everyone was a wreck and sobbing. Just a magical moment:

Then it was off to the rides! Our first ride was actually one that Grant Wanted to go on: Splash Mountain. Now we’ve been down this road before: almost every ride has a heart warning, and we were kicking off this trip with a ride that had like a 50 foot drop, so not insignificant. But Nolan was ready, so off we went. We had something called the Genie Pass, which allowed us to the front of the line for every ride and meet-and-greet, so that was SUCH a lifesaver, since waiting in long lines in the heat is not a good mix for Nolan. Anyways we were on the log ride and floating along and I was telling Nolan there would be a big drop, but to be brave and dad would be there with him. There were a few small drops and every time I checked on him and he was all smiles. Then it came time for the big drop and I held him tight…then SPLASH…and we were all cracking up, especially Nolan. He loved it!

We rode lots of rides that day, especially Dumbo, which Nolan totally loved. We did a lot of walking and a lot of smiling and laughing. It was truly…magic, for total lack of a better word. Then we went back to the hotel to get some sleep because the next day was even more fun!

Animal Kingdom

The Animal Kingdom was a really cool park and we kicked off the fun with a safari, which was really, really cool – it was like being in a whole other world! We got the opportunity to record a family interview, which you can see here in all it’s hilarious glory:

The kids were being…well…themselves lol. Nolan is especially funny in this one.

The best part of Animal Kingdom, though? Nolan FINALLY getting the chance to meet the one character he had been waiting this whooooooole time to meet….DONALD DUCK!

Oh my goodness it was so sweet: Donald saw him waiting and came and took Nolan by the hand, played with his Donald Duck hat, and gave him the biggest hug. Look at the smile on that kid’s face! My heart was just so full. We spent some time meeting other characters and going on some other rides and having lots and lots of fun. Even leaving the parks and returning to our hotel was fun, too, since while we’re at the parks, the Grin Kids volunteers leave special surprises in everyone’s room for them to come back to! Snacks, shirts, water bottles, special cooler bags and cooling towels, toys and activities for the kids. It was so awesome…and they did this every day! The next day would see us visit the final park of the trip:

Hollywood Studios

We kicked off this visit by watching a Monsters Inc show as well as the 3D Muppets show and the kids really enjoyed themselves. Then we rushed off to the special Jedi Academy show: the Grin Kids team helped to secure a spot in the show for Grant and Hudson and I gotta tell you…it was DOPE. They got robes, and lightsabers and even got to battle Darth Vader!

That was truly memorable and I am really grateful to the Grin Kids team for helping make that a reality!

One of the highlights of Hollywood Studios, and this entire trip really, was the Slinky Dog Coaster. Nolan was dead-set on going on this ride, and it was housed in Toy Story Land, which was PACKED with people…I mean you could barely move. But we used our Genie Pass and finally got to the front of the line and Nolan was practically jumping up and down. By this point Nolan had gone on several rides, including a couple coasters, so my nervousness about it was pretty long gone. This ride was a little faster than previous ones, but I thought Nolan could handle it. So how did he do? Well watch this for yourself:

Pure. Unadulterated. JOY.

That’s my Nolan…with half a heart…totally having the time of his life on a roller coaster. He’s been through so much in his young life, but this smile…it’s just special. This video is like instant happiness, and I’m always watching it. If you ask him today what his fav ride was on this whole trip, he’ll tell you the Slinky Dog Coaster. It was so much fun! before we left Hollywood Studios for the day, Nolan happened to see Donald Duck again and ran into his arms!

Back to Reality

Finally all the fun had to come to a close…we couldn’t stay in Disney forever and needed to get back to our lives. We gathered in the hotel lobby to take some more group photos and hang out before boarding our buses and getting on our special plane just for us Grin Kids families and volunteers. We arrived back home to NC and everyone helped us with our bags and even gave us pizza for the trip home. We were tired but full of joy to the very furthest reaches of our soul. We had lots of pictures, videos, souvenirs, and especially lots of wonderful memories that will last forever.

I realize we are so very fortunate to have been selected for this trip: it was the opportunity of a lifetime and we could have never been able to see Disney on our own. Ace & TJ’s Grin Kids helped make that a reality and we will forever be grateful. We’ll stay involved with their family and will continue to help pay their kindness forward and share in the joy of future Grin Kids families. Every volunteer on that trip was absolutely AMAZING…trust me, I manage volunteers for a living, so when I say they’re good, they’re GOOD. They did so much for us and I know they worked really hard to make it magical for everyone. Ace & TJ were amazing too, and so was everyone that was part of their radio show…they went everywhere with us and spent time talking to everyone, and that was really special, too.

I think of this trip often and I will for the rest of my life. It was really cool to travel with families who are in a similar situation as you are…there’s no need to explain anything: you just all know what it’s like. And that brings a level of peace to a vacation that you can’t really capture any other way. I’m sure I missed a ton of stuff on this recap, but there was so much fun to be had. Good news is you can view the recap video here and see Nolan and all his buddies having a great time:

Last, but certainly not least, I would ask my friends and readers of this blog to please, please, please consider supporting Ace & TJ’s Grin Kids financially, to help make this kind of special trip a reality for many many more years to come. Somewhere in our community is a kid just like Nolan, who has been through so much, who really could use a smile, a hug from a big Mouse, and to be surrounded by people who understand. You can help make that happen here: https://grinkids.org/donate/

So in late September/early October I went to Chicago for a work conference. I brought my staff with me and I think everyone was looking forward to it. I’d never been to Chicago before, so if I had any free time during the conference, I was gonna spend it exploring the city! Of course, I drank lots and lots of coffee and ate some amazing food. I got to see some beautiful art and learn about the city’s history. I visited the Cloud Gate and took the necessary selfie with it:

It was such a cool city. But here’s the rub: I almost missed a lot of what made it really cool. See, the way I got around the city was either through public transportation or my own two feet. So off I went, armed with my Transit App and the maps on my phone. I was pretty proud of myself getting off one train, then getting on a bus, and making it to one place or another, whether it was the Museum of Mexican Art or to have some amazing Puerto Rican food in Humboldt Park. But I was walking towards dinner one evening after walking around Wrigley Field when it hit me – I’m walking through this city looking down at the map but I’m missing the stuff I’m passing by.

Now don’t get me wrong, this isn’t a post about putting your phone down. Not at all. I had my phone out because I didn’t wanna get lost in a strange city and end up paying a fortune to uber myself out of it. There was nothing wrong with using my map app; rather, I was on a 1.5 mile walk, basically in a straight line! I couldn’t get lost if I tried! So I decided to just hold the phone down at my side and look around a little bit. And then I saw it: a cool mural here, a fun store over there, and hey look at that cool building. I started to notice the details of what makes Chicago – in my opinion – a really cool city. It’s got lots of character in the architecture, the culture, and the people. And if I stayed glued to my map, I would’ve definitely arrived at my destination, but I would’ve missed what was on the way.

So what does this have to do with being a Heart Dad? Hear me out:

How often do we overlook the cool details on this journey? How often do we let this beast that is CHD consume our focus to the point that we miss small victories?

Here’s a recent example: the other day at bedtime Nolan asked me for a drink. At first I thought, “Stall tactic!” of course. So I went downstairs and, grumbling, grabbed his cup with chocolate milk and brought it up to him. I sat there beside his bed as he held the cup in both his little hands and drank all the milk through a straw. And it then occurred to me, much like it did on the streets of Chicago: yo, this kid – the one who at one point couldn’t move his hands or arms, the one who ate or drank nothing by mouth – is sitting here in his bed, holding his cup and DRINKING! What an incredible reminder of the amazing things he’s been through, about how – at this moment in time – he is winning big time! It made me smile outside and I inside I was downright glowing, And to think I could’ve missed it.

And you guys, I also believe it can be easy to merely be focused on the far-away things, like our kids’ CHD itself. I’m not saying don’t ever think about it; frankly that’s impossible. I’m saying don’t make that the only place you choose to look. Check it out, I’ve had plenty of times where my brain is like “OHMYGODWHATIFHENEEDSATRANSPLANTICAN’TAFFORDIT!” And I get it, we’re only human, and we have this incredibly beautiful – and fragile – life to care for. But please, please, please don’t miss the smiles, the laughs, the funny stories, the hand-holding, the head lean on your shoulder, the bedtime stories, the bathtimes, the singing and dancing, the eating, the playing, the running, and the jumping. Your child has been through so much, don’t let the destination be the only thing you watch; there are so many incredible things to see on the journey.

So today, this week, this month, take some time and really look at what cool things you find on your journey. Remember to celebrate those moments that previously may not have been possible. I don’t know what your situation is, but I know it’s not easy, and I’m hoping that this little exercise helps you find some joy, some peace, and some hope along your way.

Hey Friends! I know it’s been a long while but I felt like it was good to let the summer just kinda come and go without worrying about blogging…looks like it spilled into the fall. Whoops! Sorry about that. Anyhow, it was a good summer and the BIG thing coming up for both Nolan and Grant was…THE START OF KINDERGARTEN!

Nolan did really well finishing up pre-k at one of the local public schools: he had an amazing teacher and assistant and we’re so thankful for their loving patience with him and their ability to get the best out of Nolan. His obsession with the ABC’s has made him an amazingly-good reader, but there’s still a lot of things he needs to work on, mainly writing and cutting. More importantly, we had to meet with his new school (our actual neighborhood school) to review his IEP plan in regards to things like classroom socialization, physical therapy, occupational therapy, etc. The school was very gracious and accommodating and they even had a kindergarten teacher go to his pre-k class to hang out with him and evaluate him in action. She seemed to love Nolan (who wouldn’t?) and hoped she’d be his teacher. They planned to carry on all of the needed therapies there at the school. Nolan and Grant both did their kindergarten assessments in July and then it was just a matter of shopping for school supplies, school clothes, and all that fun stuff.

While Nolan has shown improved eating with his new feeding team, he’s still on the g-tube and we had to go over some feeding stuff with his school, so we requested a meeting to develop a 504 Plan. Again, the school was amazing and scheduled a meeting the Friday before school was supposed to start. His teacher (who was the one who evaluated him, yay!), the Assistant Principal, the School Nurse, and others were present and we were able to tell them why it’s so important for Nolan to remain hydrated AND why it’s important for him to get a good number of calories in his day. We talked about his heart and everything he’s been through and told them they’re a big part in helping him succeed at eating by mouth. We also talked about using the g-tube if he wasn’t drinking well and warned about the g-tube being accidentally pulled out. The plan was if he didn’t drink a certain amount by lunch then the rest in his cup would be given via the g-tube and the school nurse would show the teacher how to use it. I think that stressed out his teacher A LOT, and we did our best to calm her down and give her the confidence that all would be well…not to mention the school is literally across the street from our neighborhood, so my wife is super close if they need her. The plan was in place and then we spent the weekend prepping for the big first day!

I’m sure a lot of you reading this have either been nervous about the start of school with your heart kid or are getting nervous about school coming soon. Trust me, I was there too. I was always wondering whether this was the right school for him, whether he’d be safe, whether he’d behave, whether he’d fit in, etc., etc., etc. But the reality is this: we did everything we could have possibly done up to that point – we discussed all the issues with his school, including the IEP and 504 plan. We talked to his teacher and principal and made ourselves available for whatever. The next logical step was to walk up to the school and hand our little boy off to his teacher…

So the day finally came. Our little Nolan; the one who survived 3 open-heart surgeries, the one who required multiple attempts at chest closure, the one who endured so much therapy just to sit, stand and walk…Nolan had his first day of kindergarten:

I mean look at this kid! I was so proud of him AND Grant. This was their time to shine and to kick off an amazing school year. They had a step-down week for their first week, so they basically only went for one day, but it was an exciting day. We drove to the school, parked, and walked our boys in to their separate (for the sake of their poor teachers lol) classes. I gave Nolan a big hug, told him I was proud of him, and told him to have lots of fun. And then we walked away.

At first I was nervous, worried, excited, anxious, all of that; but it eventually went away. I took the day off from work, and all the kids were at school and everything was quiet…Awesome! We went out for a little bit and just enjoyed some time together…until the school called.

After a brief second of dread, we found out it wasn’t an emergency, it was just that Nolan was being stubborn (imagine that) about drinking his chocolate milk and the teacher didn’t know how to use the g-tube yet and could we help. No problem! So we drove back to the school. Honestly the big worry was that Nolan would see us and wouldn’t want to stay in school. He’s kinda a homebody and we thought for sure that’s what he would do. So we got to the school, got visitor badges, and went to his classroom…and there was Nolan, happily sitting at his spot at the table painting with his favorite color, red. He looked up at us and rather nonchalantly said, “Hi Mom and Dad, look I’m painting.” And we walked up and asked him if he’s ok and all of those thousand questions and he basically acted like we weren’t even there haha that little troll. We tubed him the rest of his milk, and gave him a kiss and he was essentially like “Go away, I’ve got this.” and as we walked out of the class we could hear him singing his phonics song with his class, “The snake is in the grass, the snake is in the grass, ssss ssss, the snake is in the grass.” Everything was ok, and everything was going to be ok.

School years are a marathon, I know it, and there will be easy weeks and difficult ones; but I think Nolan is in the right place for him – his teacher is super sweet and kind and he loves learning his letters and numbers. I know with our heart warriors it’s never as simple as sending them off to school – there’s so much to plan for, so much to worry about, and so much to explain. One that’s all done, though, keep an eye out – your kid will definitely surprise you! Here’s to a great year, kiddo.

Do you remember this joke (I use the term joke loosely) from your childhood?

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: Re-Pete.

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: Re-Pete.

Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?

Person 2: *Mauls Person 1*

Bruh. I know some of you just read that and came to the crushing realization that this joke has become a lot like your life, because you have small children who – let’s face it – can’t listen to save their lives, or just the daily act of being a Heart Parent is a lot of the same stuff over and over and over again. Ah, repetition. Don’t we love it?

If you’re anything like me, repetition is a struggle. My grandparents, at points throughout their lives, worked at factories and sometimes I think about that and can’t imagine doing that kind of work – standing in one spot, doing a repetitive task over and over again until I can go home. I would lose my mind. But hey guess what…Heart Dad life can sometimes be like it too. My struggle is often with the pharmacy: I use the pharmacy here at work because of the convenience and since the cardiology office is right next door in case I need any questions answered. But eeeeeeeeeevery month it’s the same thing for one particular med, and it goes like this:

Me: Hi I’d like to call in a refill for my son’s medicine *gives name and birthdate*

Pharmacy: Ok, which med?

Me: Sildenafil

Pharmacy: Um…it says here you’ll need to use the mail order pharmacy for that.

Me: Yes, I know, but I’ve talked to them and they can’t do this med, so I need you guys to do it.

Pharmacy: Are you sure?

Me: Yes, I’m sure…been doing this same call for months.

Pharmacy: Well let me call them and find out and I’ll call you back.

Me: *screaming internally* ok

*15 minutes later*

Pharmacy: Ok, we’ll have it ready at 2.

Dude. Same thing. EVERY. SINGLE. MONTH. It really used to make me go guano as I have to repeat the same thing over and over every single month. Whenever I pick up the phone to call in this med, I know exactly what will happen. But repetition is everywhere: every month call in new feeding supplies, keep track of meds to call in refills in time since they’re closed on weekends, give meds at 6:30 then 2:30 then 10:30. On and on. Repetition is everywhere in our lives!

Why does repetition make us nuts? Well it’s because it can be monotonous, it’s the opposite of spontaneity and sometimes feels a bit confining. We want to spread our wings and do whatever, whenever…right? Right? But check it out: nature…the very universe itself…is repetitive, and no one freaks out. The sun rises, the sun sets, Earth turns, the seasons change, etc. And this repetition is important to us…if it didn’t happen, we’d freak out and it’d be pandemonium in the streets!

Let’s face it, friends…for a lot of us, the repetitive nature of being a Heart Parent won’t go away anytime soon. There will be meds to give, tube feeds to do, treatments to complete, appointments to go to, refills to call in. I think we can all make an effort to change the way we view these repetitive tasks:

Add Something Positive to the Experience: so if you gotta do it, make it purposeful and a win for everyone. When I give Nolan his feeds at night, it’s easy to see it as just part of the daily routine, but I’ve started using that time to just look at him and – even though he’s asleep – whisper to him that I’m proud of all he’s accomplished. For those couple minutes I can celebrate who he is, and that always makes me feel good, as opposed to “Lemme finish this so I can move on.” Or when I go pick up his meds from the pharmacy: I try to chat up the team if they don’t have a long line. A smile, a “hello,” and a “how’s everything going today?” goes a long way towards helping you not become the “here he comes again” guy.

Remember The “Why” Behind the “What”: as mind-numbing as this can sometimes be, it’s all for a purpose. Your kiddo needs the meds, needs the feeds, needs the appointments. It’s all part of the job of protecting them and giving them the best shot at a great life!

Pat Yourself on the Back Sometimes: don’t get a big head about it, but you know what? You’re doing a really good job…tell yourself that every now and then. You’re playing your part in making this happen and keeping your kiddo as healthy as possible, so give yourself a little bit of grace. You’ll always be ready to go back for more when you feel good about what you’re doing.

Embrace it, Don’t be Resigned to it: there’s a huge difference between “this is my life and I’m gonna learn to work with it” and “*sigh* I GUESS THIS IS MY LIFE NOW.” I get it, sometimes you can feel both, depending on the week or how much you’d have to deal with the kids smearing mystery goo all over the house. But if you can embrace the repetition more than you just get resigned to it, you’ll find it much less of an inconvenience. It’s the new normal, remember? I know it’s not easy, but just try!

Keep your head up, friends. I know sometimes the repetition gets crazy and I know it’s turned your life upside down. You can’t go out like you used to, can’t just get up and go, and your calendar is full of reminders about meds and dr appts and whatnot. I’m not trying to say “just deal,” that would be callous of me…we gotta work with what we got, but we also have to change the way we look at what we’ve got. You can do this.

So I’ve been writing this blog for a few years now and in it I’ve talked about our journey with Nolan, the ups and downs of being a Heart Dad, I’ve offered encouragement and all that good stuff…but it’s occurred to me that I haven’t spoken once about a superpower that lives within all of us Heart Dads. Is it super strength? No. Super speed? God no, I run like a drunk sloth. Intelligence? My high school math teachers will tell you otherwise. No, the superpower we have is…

THE DAD JOKE.

Now that the kids are all relatively school-age, this power has begun to manifest itself in my household, in the car, in the grocery store…heck, wherever. Much to my joy and my kids’ chagrin. My oldest, Hudson, is usually on the receiving end of the Dad Joke(s) and the resulting cackling that follows them, often to the point where I’m coughing from laughing at my own joke. Sometimes I spend days focusing on a theme…lately it’s been pirates and it’s been like this:

Me: Hudson, where does a pirate grow his vegetables?

Hudson: I don’t know.

Me: In his gARRRRRRden! *laughs loudly*

Hudson: Ugh.

Me: Hey Hudson! Why does a pirate like reading magazines?

Hudson: For the articles.

Me: NO! For the ARRRRRRRRRRRRRRRticles! *laughs louder*

Hudson: Stop

Me: *singing loudly* In the naaaaame of looooove. Before you break my heAARRRRRRRRRRRt!

And on and on. I cracked up just typing it out. So what’s the deal with me writing about Dad Jokes?

May is Mental Health Month and while it’s coming to a close, I really wanted to write about it since mental health is so important for us as Heart Dads. And you know what? Laughter is actually really really good for your mental health:

It Makes You Happier: I mean, duh…I’ve never seen a cranky person cracking up laughing. It can instantly lighten your mood.

It Releases Good Hormones: when you laugh, you release dopamine and serotonin, which make you feel really good and helps battle things like depression.

It’s Good for You, Physically: laughter burns calories! Now hold up: don’t cancel your gym membership…it’s not a ton of calories, but it helps nonetheless. So laugh away!

It’s Good for YOUR Heart: listen, we spend a lot of time focusing on our kids’ hearts, which is of course very important, but we need to pay attention to our hearts too! Laughter helps with blood flow, which is really good for your ticker.

It Helps You Be More Social: laughing with someone or a group of people always makes you feel better and develops a special bond and relationship with is so helpful for our mental health. Whenever I get together with my best friends, we tell the same stories and laugh til our sides hurt, every single time. And I wouldn’t trade that feeling. It always makes me feel good and I love them for it.

So Dads, get out there and drop a corny joke, or three…laugh…make others laugh. Watch a funny movie, fire up Netflix and catch a standup comedy special. Anything. Just laugh. We deal with so much heavy and serious stuff that I think this is the first to fall off…don’t let it. There’s an appropriate time and place for jokes and laughter and I trust you to know when that time is…and when that time comes, don’t be afraid to use your superpower to make others – and yourself – laugh. Do it for you…because a better you is better for everyone else!

I also realize that not everyone who is reading this is in a place where laughter is possible or appropriate. You’re going through some difficult, heavy things and you’re just taking it day to day. Please know that I understand and that I support you and any of my friends who read this can reach out to me for a supportive ear. Please know that I have a lot of other posts on here regarding mental health that could help you: